Thursday, 30 December 2010

Arguments & Medical Notes

26th February 2010

Went to my appointment this week for my needle core biopsy to be repeated. The radiologist ran the ultra sound scan across my chest with another doctor observing the image.
“Are you still breast feeding?” The doctor asked.
“No my youngest daughter is five now.” I look on puzzled.
“It shows that you are still producing milk.” She replied.
Then I started to explain how I had high progesterone levels when I was sent for the first mammogram. The radiologist insisted it had nothing to do with breast cancer.
“I want you to have a MRI scan and I shall forward this request onto your consultant.”

I returned home from my hospital appointment and I remembered what my GP had told me back in September 2009. The reason he had sent me to the hospital was he thought I might have a tumour on my pituitary gland not breast cancer.
So I decided to research it online at the Macmillan site and to my surprise there is a possibility I have been misdiagnosed since 1990. I am a diabetic type 2 one of the symptoms of a tumour of the pituitary gland is diabetes insipidus. The two types diabetes mellitus and diabetes insipidus share many symptoms. Physicians are more inclined to diagnose diabetes mellitus rather than diabete insipidus because it is easier to diagnose. There are various tests that can be done one of which is a MRI scan.
Thankfully I have some medical papers that I requested years ago. Which were arguing what type of diabetic I was back then. I know this is all speculation ladies without a doubt, but better to have a MRI to rule it out.

When I saw my diabetic nurse for my yearly check and blood results. Everything is normal, but she is confused over my results. The fact I was diagnosed as borderline diabetic in 1996 and not developed the diseases yet. I remained silent for a while until she mentioned it must be gestational diabetes.
The research I have been doing on the internet for the piturity gland tumour. Highlights that there are a number of DI one of which is gestational.
I have requested a copy of the letter sent to Miss S my oncologist consultant dated 14th August 2009. I also requested my blood results to be printed so I can see how high my progesterone levels were.

Letter from Dr S to Oncologist.



Dear Miss S

Re: MRS SARAH MENDOZA DOB: **/**/**** NHS NO: *** *** ****
       18 **** **** ROAD, NORTHOLT *** ***

Many thanks for seeing Sarah in your clinic.

She is a relatively new patient of mine who came to see me recently, saying that she was having tenderness in her breasts, as well as a discharge of a milky liquid particularly in her left breast. Her youngest child is now 4 years old, and she confirmed that she did breast feed for a few months. She is otherwise fit and well having a current medical history of diet control to her diabetes, although I do note that recent plasma glucose is 5.9. her previous recordings have been more on the borderline range. On examination, there were no discrete lumps, although her left breast was a little fuller and on local lymph nodes. I did some routine blood tests a copy of which I enclose, which shows an elevated Prolactin. Otherwise her bloods are normal.

I would very much appreciate your further investigation and treatment options.

Kind regards
Yours sincerely

Dr S

These are the test results:


Description                                Value        Unit         Ab        Range

Serum prolactin level                 798            mIU/L       !         102 – 496
Serum total bilirubin level             9            umol/L                          <20
Serum alkaline phosphatase         59           IU/L                       35 – 105
ALT/SGPT serum level               44            IU/L          !            10 – 35
Serum gamma GT level               27            IU/L                         9 – 35
Serum potassium                           3.8          mmol/L                 3.5 – 5.1
Serum sodium                             142           mmol/L                136 – 145
Serum chloride                            105           mmol/L                  98 – 107
Serum creatinine                            67          umol/L                    49 – 92
Serum urea level                            5.9         mmol/L                 1.7 – 8.3
Serum albumin                             46            g/L                          34 – 50
Serum HDL cholesterol level        1.6         mmol/L                 1.2 – 1.7
Serum LDL cholesterol level        2.79       mmol/L                       <3.0
Serum cholesterol                          4.8        mmol/L                  2.3 – 4.9

! = abnormal

Reading the results above and the research I have done online does bring up questions. The few people I have spoken to question whether the DCIS was not triggered by me lactating. The fact that I had been lactating for such a long period of time meant the milk that was produced was sat in the ducts with nowhere to go unless the body absorbed it. If I look back over to 1994 I was still lactating then. I did not breast feed Kayleigh so really it should of dried up. Not only that, but when I had Sophia in 2004 she would refuse to feed off the left breast because the ducts would be blocked all the time. So much so that I would be sat in a hot bath trying to manipulate the blockage free.
I have a lot of questions, but no answers until they do the MRI scan.

I rang my breast cancer nurse up today to double check an appointment. When reading my notes she could not see the MRI request being made. My blood is boiling and I started to relay the conversation that took place in the ultra sound room. She repeated she had no evidence that the request was made. She then said I would have to make a request through my GP for the MRI scan to be done. That the consultant I have is a breast surgeon not a neurosurgeon.
What confuses me is my right breast is lactating. Is that not a breast problem or am I just a neurotic patient once again.

(This whole situation reminds me of why I went underground with my diabetes. They honestly do not know who, what, where or why. I remember asking my diabetes consultant Dr W in 1996 is there a connection with diabetes and pre-eclampsia. He said No, but if you read up on diabetes now it says there is a link. They said after the consultation in paperwork I have that I was getting incorrect information via family and friends. My information was from my local library and leaflets. My family did not know I had diabetes until I reacted to a family debate about my weight. They tried to say I was anorexic or had a eating problem. A friend who came to the clinic with me 19th November 1996. She read my maternity notes that I had requested they pull from 1990 because they were telling me information I did not know. My friend understood my anxiety towards the medical establishment reading those very notes. Even she had questions that clearly they were uncomfortable about answering. The reply she received was “You must understand the treatment that Sarah received then is no longer used.”
They also say in the paperwork from 1996 that the consultation I had was more of a counselling session.
They clearly admit in my paperwork addressed to each other that they had made errors. That I was gestational diabetic back in 1990 and I had not been followed up. That I was clearly angry and confused about my first pregnancy. But I had remained asymptomatic during the time passed which they found unremarkable. Well it is now fourteen years down the line and I’m still the same.)
When speaking to the breast care nurse I went into great detail that I have my blood results and why I am concerned. The BC nurse was surprised that I have my blood results dating August 2009. The BC nurse said she would relay my concerns back to my consultant and would contact me on Wednesday.

I ring my GP surgery up and an appointment is made for Thursday 4th 6.50pm.
Kayleigh has an appointment for a MRI scan on the 23rd March and I am going with her. Perfect timing for both of us to have an MRI. Her condition is different though. She suffered febrile fits as a child and for some reason she is passing out again.

I went to my plastic surgeon appointment with a dragging sensation all the way. My cancer surgeon had told him that there were no problems. Yet when I saw my cancer consultant I was told I was on three monthly observation and a core biopsy.
The Plastic surgeon is left confused and insists that they shall delay the nipple reconstruction for a further three months until it is clear. If a decision still is not made when the three month check comes up I am to cancel the appointment and rebook it. Something tells me the team I thought I had is disconnected somehow.
I find this uncomfortable because it is not how it should be. Part of me wanted to spill the beans with the stress I am under, but he is not a therapist.  
He then went on to examine me and my breast.
“Are you happy with your breast?” He asks me.
“Why can you make it look better than this?” I reply smiling looking down at my chest. My breast does not look bad now it is settling down. It is still a little hard and gives me the odd sharp pain, but I have no complaints. Steve thinks it is a marvellous job and neat, but if they could tweak it and the other breast I would not complain.
“You will be surprised at what we can do now.” The plastic surgeon replied.
“Yeah, but you can’t repeat mother nature.”I quiz.
“We will give it a good go.” He smiled at me trying to convince me.
At least I know they have plans if I agree once my other breast is sorted.

Clearly it is costing the national health system more money passing me from pillar to post. Rather than just giving me an MRI scan to clear the whole situation up. My disappointment is clear to be seen by all who come into contact with me. My bubbly outgoing personality is slowly being squashed by all what is happening.
I have no time for tears or a shouting match because it will clearly not be heard or seen. My life is on hold yet again until someone else makes the right decision.
So I must return to my GP who said he thought I had a brain tumour and trash it out with him. Or have a repeat blood test done to show my prolactin levels have returned back to normal. But I am still producing milk so my prolactin levels surely must be high. I am so glad I am not a doctor because even I would not be happy with this puzzle.

My daughter Kayleigh phoned me up to say, that the hospital that has her notes from when she was 16 months old charge £10 admin charges and twenty pence per copy. No wonder her doctors do not have the faintest clue about her history. They would not want the charges incurred on them.
They are requesting I be present at one of Kayleigh’s consultations to discuss her history of febrile fits that took place when she was sixteen months old. When really they should have the official notes that tell them direct what she has had done. How on earth I am suppose to remember details of something that took place eighteen years ago is beyond me. I told her to request the notes from Hull royal to fill in the gaps with medical jargon they understand. That way when I go they cannot say it is a fabrication because it is officially recorded in her medical notes.
Kayleigh is beside herself with worry and theses people do not have the sleepless nights she has to contend with. Thankfully her situation is totally different to mine and she is under a different GP, consultant and hospital. This whole situation is crazy to say the least. Thank the lord that her MRI scan is booked at least my daughter can finally have some closure to her medical problems.

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